Lisa Today

LISA TODAY - February 22, 2009

The latest on Lisa- a 3^rd Anniversary Update

Hey gang, Richard here. As we pass Michael’s third birthday, we approach the third anniversary of the catastrophic event that denied him in so many ways the blessing of being Lisa’s son.

We have much to be grateful for, compared to where we started that horrifying night three years ago. Lisa’s heart was stopped cold by a lethal genetic condition that had been the undiagnosed cause of her own father’s death when she was 12. The defect in her genetic code, known as Long QT type 3, had lain dormant and deadly while she competed in cheerleading, tennis and swimming, completed her education, traveled the world and had met and impressed all who knew her from U.S. Supreme Court Justices to the corrupt politicians and sex offenders she prosecuted and sent off to prison.

In truly a most cruel twist, it wasn’t until Lisa added one more title to the list of accomplishments she’d sought, mother, that this monster surfaced. Those who have followed these updates will remember all that came next- the first frantic hours and weeks, the initial thought that Lisa was stabilizing followed by the horror of the Stevens-Johnson reaction to one of her med's. The panicked helicopter flight to Phoenix, the slow recovery back from the abyss again. We were all so hopeful after Lisa was transferred to St. Joseph’s and placed under the care of the Barrow Neurological Center, giving her the best chance for the best recovery possible. However, despite initial promising progress the injury inflicted in those first few minutes continued to extend its reach slowly, steadily taking that opportunity away.

A recent round of tests, including another CT scan of Lisa’s brain show the devastation caused by the lack of oxygen after her heart stopped. I learned that less than 1% of those suffering out of hospital cardiac arrests survive more than a year. Knowing that she was already an odds beater, all of her family, friends, doctors, therapists and those who joined us through these pages prayed she might somehow have avoided the worst of what such an injury means. But that was not to be.

Lisa isn’t able to move, speak or communicate with us in any consistent, meaningful way. The brain injury caused spasticity which has, despite her receiving all the medical treatments available, continued to stiffen and cruelly twist her body. While she doesn’t appear to be able to see, Lisa does startle in response to sudden touch and loud sound. Her heartbeat and oxygen saturation, constantly monitored, also provide insight. Learning from these reactions, we’re able to know when she’s uncomfortable or otherwise distressed. Lisa is completely dependent on round the clock care provided by her caregiver, Patrice (during the day) and me (at night). Her many medications, nutrition and fluids are administered by a feeding tube, and while Lisa breathes on her own; she’s more comfortable with a little oxygen to assist her. A tracheotomy tube helps us keep her airway and lungs clear through regular suctioning.

Because of these limitations, we can’t be sure how much Lisa understands about all this. As I mentioned Lisa does show a “startle” reaction, but she doesn’t react to other things like hearing Michael or being spoken to by those she loves or on topics that would be of interest to her. However, I’ve continued to operate on the assumption (I won’t call it a hope) that Lisa can understand more than she can express. So while I don’t know she does perceive these things, because I don’t know she doesn’t we work off of the belief she does.

This means we keep Lisa in the center of our lives at home. She sleeps in her bedroom with her husband and son nearby, spends the day in her home, enjoying the breeze on the patio, listening to the wind chimes or books on tape her brother’s family gave her for Christmas and smelling the roses and jasmine she planted. Lisa joins me in the kitchen while I cook dinner and later when I read to Michael. We put the phone on speaker when she receives the regular calls from friends and family like nephew Collin and Godparents Jack and Napua.

Lisa’s condition makes bringing her with us when we leave home more difficult. The cost of a wheelchair van has been beyond our reach. Fortunately, our town of Oro Valley does provide a van that takes Lisa to doctor’s appointments or we’d be in real trouble. Still, this has limited our family outings or Lisa joining us when I take Michael to the playground, to church or to the store. I hope to be able to address this in the future.

Medically, despite her enormous injury Lisa is stable, safe and secure. The consistency and excellence of the care Patrice provides along with Lisa being out of a place filled with sick people has eliminated the terrifying cycle of infections and complications. The medical equipment used at home for Lisa ranges from as good to vastly superior to what she’d receive in any facility anywhere. The medical team available to Lisa has responded quickly when we have had problems (mostly involving the tubes that drain her stomach or provide nutrition). The bottom line is that I believe Lisa is in an environment where the complications folks in her condition are vulnerable to (skin breakdowns, pneumonia, etc) are being kept at bay.

The one constant source of joy and happiness during all of this has of course been our beautiful, cheerful, destructive son. He is helpful to a fault when furniture needs to moving Vetrano daddy needs help in the kitchen washing vegetables or out in the garden or yard Just as Lisa’s, genetic condition didn’t keep her from being a dedicated jock, neither has Michael’s. It’s hard to say at this age if he’s got Lisa’s ability or his father’s enthusiastic clumsiness. Still, he’s the joy of our family. Since our last update, Michael had his first experience carving a pumpkin and trick or treating on Halloween. He was quite unenthusiastic about the enterprise, even though I’d found a Thomas the tank engine costume. That is, until he figured out the goal was… CANDY! Then, he was a trick or treating machine!

Thanksgiving had Michael escorting Dad and Sherry to visit all my sisters’ families in Illinois. Sherry’s daughters, Dana and Chris along with their broods met in Chicago. Sherry and Dad hauled Michael to Galesburg where Laura and James got to love him up as well.

Christmas was wonderful despite my being stuck in a trial that went from the first of December through the middle of January. Godparents Jack and Napua came in for Christmas and what they’d hoped would be balmy weather (oops). Patrice’s daughter, Laura, on Christmas break from Arizona State came down to see her Mom. Just after Christmas, Laura and James escaped from the frozen tundra of Galesburg to the now-balmy Tucson (Jack and Napua having just left) so we had a great guest list for the holiday’s.

We continued our tradition of decorating the Christmas tree on Christmas Eve. This tradition was actually created due to my again running out of time to complete the task before everyone showed up. Oh well Dad, Jack and Michael had fun.

The presents, food and football were all pretty wonderful but the company was best of all. Michael certainly enjoyed his gifts but likes the act of opening them most. It’s only later that he figures out there are toys and books involved. The magic of a little snow on Christmas day was, unfortunately, lost on him leaving him confused about whether it was Christmas or Halloween fortunately Aunt Laura straightened him out.

Michael’s third birthday was another treat. Just as I’ve discovered the joys and mysteries of “Spongebob Squarepants,” “Thomas the Tank Engine” and “Wow Wow Wubzie”. I now have learned the magic of Chucky Cheese and our local variant, Peter Piper Pizza. Introduced to the secret by our friends Carl and Tracy Miller (anything that works with their 3 boys is good enough for me), I found a place combines everything necessary for a great birthday party: the back half is filled with rides and games. At the front are tables where parents can maintain surveillance with the door at their backs. In the middle of the place, there are counters where you order the pizza. But the real prize (for me) that makes this place not just endurable, but magic? You got it, ice-cold beer!

Michael’s development is amazing to me. He’s exceedingly polite, even while being completely unreasonable- “Hi, daddy. Can I please have some chocolate pudding?” while on the playground. Of course, as soon as you tell him we’ll have to do this later, he’ll think about it, and usually says, “ok, daddy, deal!” holding out his hand to confirm the arrangement with a “gimme five”.

I’ve been fighting a cold this weekend, and while I’m typing this, he’s brought me a steady stream of toys, snacks and drinks asking if I’m still sick and if I’m taking my medicine. Michael’s treatment of Lisa is the most wonderful of all. He’ll adjust her blanket if he thinks she’s cold. He understands when I tell him I’ll take care of him “after I take care of mommy”. When we come home at the end of the day he comes through the door shouting “hello, mommy!” and says goodbye each morning as we leave.

The rest of our little band is doing well also. Dad is still Michael’s best friend, ally and advocate (read spoiler). He picks Michael up each day from school and they knock around till I come to get him. Sherry’s taken on two new jobs and despite her perpetual struggle with desert allergies and the understandable loneliness of missing her kids and grandkids up north, is keeping us all in line.

In addition to providing outstanding care for Lisa, Patrice is continuing her online degree program recruiting our neighbor and regular rescuer Jim to get poked and prodded for her practical medical exercises (I’ve convinced her it would be a conflict of interest for me). She’s also studying Spanish, which is a handy thing to have in Tucson. So with these friends and family you can see that we’re doing just fine.

Our Best To You All!

Richard.